What do dementia patients think about

If people with dementia shared their thoughts and feelings with us, these 10 things might be some of the many things they'd point out.

People with Alzheimer’s or another dementia aren’t children. They’re adults who had jobs, families, and responsibilities. They may have been very accomplished in their field. They are mothers and fathers, sisters and brothers.

Yes, you may need to slow down the amount of information you provide at once or use a few other strategies to effectively communicate. But you don’t need to speak very loudly if they don’t have a hearing impairment, and speaking too slowly doesn’t help either. Get more tips for talking to someone with dementia.

We’ve seen it many times: the person with dementia is almost completely ignored when they say something, whether it’s about their level of pain or what happened yesterday when their grandson came to visit. You can’t always believe everything that you hear from someone with dementia, but give them the courtesy of allowing for the possibility that they might be correct periodically.

Is your friend with dementia staring zoning out and staring off into space? Sure, it might be because their ability to process information is decreased. However, it might also be that they need something other than Bingo to fill their time. Make sure they have something to do besides sit there.

Not being able to remember something can be very anxiety-provoking and frightening. This can be true whether the person is in the early stages of dementia and very aware of their problems, as well as in the middle stages where life can just feel constantly uncomfortable because nothing is familiar.

Don’t take it personally. In the early stages, it might be your name that they can’t recall. In the middle stages, it may be entire events that are gone and even if you retell the story, it might not come back to them. This is not because they don’t care, it wasn’t meaningful to them, or they’re somehow choosing to forget it. It’s the disease.

It’s not their fault. Yes, there are some things that research says may reduce the chances of developing Alzheimer’s, but there are many people who have developed the disease despite practicing those healthy habits. We still aren’t sure exactly what triggers Alzheimer’s to develop, so let go of the thought that they should’ve done this or that to avoid the disease. It's of no help to either one of you.

Your tone and non-verbal body language are very important. Be genuine and aware of what your non-verbal gestures, sighs, rolling of the eyes, or loud voice is communicating.

Don’t just write off a challenging behavior as if they were choosing to be difficult that day. Most often, there’s a reason that they are acting the way they are. This can include becoming resistive because they’re in pain, being combative with care because they’re feeling anxious or paranoid, or wandering away because they’re restless and need some exercise. Take the time to work on figuring out why the behavior is there and how you can help the person, instead of first suggesting a psychoactive medication.

And, you need them. Don’t let dementia rob you both of more than their memory. Continue to spend time with them and nurture the relationship. Although Alzheimer’s changes things, we don’t have to let it have the power to divide loved ones. You both will benefit from the time you enjoy together.

People often live for years with dementia. While it can be difficult to think of these diseases as terminal, they do eventually lead to death. Caregivers often experience special challenges surrounding the end of life of someone with dementia in part because the disease progression is so unpredictable. Below are some considerations for end-of-life care for people with dementia.

Making medical decisions for people with dementia

When making health care decisions for someone with dementia, it’s important to consider the person’s quality of life. For example, medications are available that may delay or keep symptoms from getting worse for a limited time. Medications also may help control some behavioral symptoms in people with mild-to-moderate Alzheimer’s or a related dementia. However, some caregivers might not want drugs prescribed for people in the later stages of these diseases if the side effects outweigh the benefits.

It is important to consider the goals of care and weigh the benefits, risks, and side effects of any treatment. You may need to make a treatment decision based on the person’s comfort rather than trying to extend their life or maintain their abilities for longer.

As a caregiver, you will want to understand how the available medical options presented by the health care team fit with the needs of both the family and the person with dementia. You might ask the health care team questions such as:

• Who can help me with end-of-life care for my loved one living with dementia?
• How will your suggested approaches affect their quality of life?
• What are my options if I can no longer manage the care of my loved one at home?
• How can I best decide when a visit to the doctor or hospital is necessary?
• Should I consider hospice at home, and if so, does the hospice team have experience working with people living with dementia?

Being there for a person with dementia at the end of life

As dementia progresses, caregivers may find it hard to provide emotional or spiritual comfort to a person who has severe memory loss. However, even in advanced stages of dementia, a person may benefit from such connections.

Sensory connections — targeting someone’s senses, including hearing, touch, or sight — may also bring comfort. Being touched or massaged can be soothing. Listening to music, white noise, or sounds from nature seem to relax some people and lessen agitation. Just being present can be calming to the person.

Palliative or hospice care teams may be helpful in suggesting ways for people with dementia and their families to connect at the end of life. They also may be able to help identify when someone with dementia is in the last days or weeks of life.

Signs of the final stages of dementia include some of the following:

• Being unable to move around on one’s own
• Being unable to speak or make oneself understood
• Eating problems such as difficulty swallowing

Though palliative and hospice care experts have unique experience with what happens at the end of life and may be able to give a sense of timing, it’s hard to predict exactly how much time a person has left.

Supporting dementia caregivers at the end of life

Caring for people with Alzheimer’s or another dementia at the end of life can be demanding and stressful for the family caregiver. Depression and fatigue are common problems for caregivers because many feel they are always on call. Family caregivers may have to cut back on work hours or leave work altogether because of their caregiving responsibilities.

It is not uncommon for those who took care of a person with advanced dementia to feel a sense of relief when death happens. It is important to realize such feelings are normal. Hospice care experts can provide support to family caregivers near the end of life as well as help with their grief.

If you are a caregiver, ask for help when you need it and learn about respite care.

Someone newly diagnosed with dementia might not be able to imagine the later stages of the disease. But when a person is first diagnosed with Alzheimer’s or another dementia, it’s important to make plans for the end of life before the person with the disease can no longer complete advance directives and other important legal documents. End-of-life care decisions are more complicated for caregivers if the dying person has not expressed the kind of care they would prefer.

Read about this topic in Spanish. Lea sobre este tema en español.

For more information about end-of-life care for people with dementia

NIA Alzheimer’s and related Dementias Education and Referral (ADEAR) Center 800-438-4380